I suffer with Severe Allergic Asthma which is getting worse- currently awaiting my first dose Xolair (still).
I’ve been experiencing an unusual flare during the last month but this one has felt slightly different. My worst symptom is breathlessness and I never wheeze. I have noticed at times that I’m getting breathless and lower down in my throat feels a little restricted too. It’s got me thinking that when this happens, it’s more of an allergic response than a symptom of asthma (even though there is a crossover).
Does anyone else experience this? My asthma symptoms don’t ordinarily fit into the norm but I always listen to my body and I’m wondering if it’s trying to tell me that my allergies are getting worse.
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MrsCMK
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I’m afraid I can’t answer your questions but my asthma does affect my throat. A bit like a dry cough. Does it respond to your rescue inhaler?I’m assuming it is your hospital respiratory clinic who are giving you Xolair. I would give them a ring and see if you can get an appointment because your symptoms are worse.
I agree with Troilus. I have brittle asthma and also Eosonophilia and on a vast number of medication for my health. I always find that if I call the secretary dealing with appointments may be able to assist you with an earlier appointment, and is unable to expedite your appointment, I always contact my GP surgery and 9 x out of 10 he has been able to get me an earlier appointment. I know my GP's very well and they understand my problems and we get on very well which helps a lot when dealing with hospitals. I wish you all the best in getting better ASAP. Incidentally I also very rarely wheeze and some of the NHS medics say that you always wheeze with asthma. I have a written note stating that not all asthma suffers have a wheeze especially ones who have Brittle Asthma [Hard To Treat]. Do not let them try to undermine what you know, it is your body and know how you are feeling
You’re v lucky to have a GP that understands your condition, it must give you a lot of confidence in the treatment and support that you receive? I have a lovely GP but asthma really is not his specialty, he tends to take the lead from my asthma nurse (who is ace), he’s a great listener when it comes to my asthma though.
I certainly think I need to keep on pestering the respiratory clinic. It’s a shame to have been approved for Xolair but be told after a month that appointments are being offered due to there being no nurse.
I called the resp. clinic this week to ask whats taking so long- the nurse that administers Xolair is on the sick, talk about bad timing eh? I’m going to chase this again on Monday to see if I can have it done at a different hospital.
Luckily, the symptoms do respond to my rescue inhaler but it usually takes 6-8 puffs for full relief. I think I just need to pursue this with the respiratory clinic or bring forward my routine immunology appointment.
This to me is a cop out and I would be putting a complaint into your locals PALS service which is available on line at pals .co.uk {i believe} as I think that that other personel within the hospital should be available. POINT OUT THEY WARE DEALING WITH YOUR HEALTH. Sorry to get stroppy about this point
Actually, now that you’ve said that, I should be more frustrated. Thank you for giving me a kick up the bum...I’ll be sure to make a nuisance of myself on Monday. I’d love to find out how long someone should wait for their first dose once they’ve been approved?
So, a brief update for you. I called this morning and surprise, surprise, there was no nurse there to tell me when I’d be offered an appointment. I have however been promised a phone call tomorrow with a date...I won’t hold my breath (no pun intended 😉)
Hey! Ok, I have an update. Today I received a phone call inviting me for my first dose of Xolair on Thursday 🥳 Thanks again for giving me the oomph I needed to pester and chase 👍🏽
I, too, suffer with severe allergic asthma but with aspergillosis and it’s related complications. I was on Itraconazole for years but had to stop it due to liver problems. I was then eligible for Xolair and had my first injection last month (2nd next week!). I haven’t noticed any particular improvement yet as it’s early days, but hoping it will reduce my need for maintenance dose of 12.5mg Prednisolone daily and it’s unwanted side effects such as adrenal suppression, joint pain and weak, wasted muscles! I’ll keep you posted.
I too feel that I suffer more with breathlessness than actual asthma attacks now. Following a stint of pulmonary rehab, I was prescribed ambulatory oxygen. I have a portable concentrator which I use when required eg walking, exercising(!!), whenever I am struggling to breathe really, and I find it very helpful and reassuring. I measure my o2 level which easily drops into the 80s and use o2 /rest until it returns to 94+.
I attend the severe asthma clinic at the North West Lung Clinic, Wythenshawe Hospital in Mcr and have been treated for aspergillosis (ABPA) for the last 19 years! My consultant there is very knowledgeable in the subject and they carry out a lot of research to keep up with current developments.
Have you ever been tested for ABPA? Your GP sounds open to suggestions and it might be worth mentioning ?
Unfortunately I am registered disabled now due to my poor lung function and I had to leave my career in teaching as a result of my ill health 😟
However, I am trying to maintain some quality of life and keep as active as I can.
I hope your Xolair treatment (trial?) commences soon. It’s really frustrating that it’s delayed as a result of staff sickness!! Unfortunately that’s the state of the NHS at the moment, short-staffed and underfunded. However, you must fight your corner and get the treatment you’ve been prescribed.
Good luck and do keep in touch with your progress 😊
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